hypersensitivity (especially noise)?

[Maria3667]

Thanks so much for the replies. I've learned a lot.

jazz and maria: I thought of Lymes also but I don't recall having the initial symptoms (flu, joint pain, rash, etc). Is it possible that the onset was mild enough that I didn't notice it? I was tested 2 years ago but maybe its time for another test. We have tons of deer ticks around here and it would explain a lot.

Hi Iggy,
I've never heard of the onset being slow. Just so you know there is not 1 conclusive test for Lyme's, because of false negative readings. But if you would have contracted Lyme's I'm sure you would be very much incapacitated by now. Sjogren's being the lesser of 2 evils, in my opinion...

Edit: fatigue, hypersensitive hearing, muscle or joint pain are very common symptoms of Sjogren's. I fight off my fatigue successfully with thyroid hormones. For the bodily aches I still have not discovered any supplements I can tolerate.

Take care,
Maria

[cccourt1942]

LInda hit the nail on the head. It is hyperacusis.  I am a retired speech pathologist and this is a phenomenon observed frequently in students on the autism spectrum.  Others may experience it, yet this is the most prevalent population exhibiting this VERY real and VERY painful symptom in public schools.

As I entered the perimenopausal period of life I developed sight and sound sensitivity.  I too carry earplugs with me......have for about 30 years. (they are much improved  )  I am widowed and have lived by myself for a dozen years.  Though my husband had never enjoyed the stereo on as loudly as I kept it, he did turn up the TV.  I found myself (after work) playing bridge with earplugs in to sit with him while watching TV.    What we women do!

The sight sensitivity resulted in my living a cavelike existence. 

Now then...after a couple years on plaq and LDP (now at 3mg) I let the sun shine in, I can actually drive on a sunny day without sunglasses, and my music is back.  I continue to listen to TV on a very low volume.  Don't know what that is about.  Don't know which med made the big diff..or both!  I believe the prednisone.  The anatomy of the auditory canal is quite interesting....but all the understanding of it in the world can explain auditory perceptions.  Quite interesting.

I can see why an audiologist would hedge on giving you a cause...but the neuro?  Thought that specialization could explain what happens. 

btw:  I believe my SjS symptoms ramped up about the same time...will never know...but I think it.  I haven't ever heard of a peri or post menopausal female complaining about these sensitivities as I did.  Oh...and the autistic students I had, I was so relieved I had always understood their sensitivities and other behaviors which were soothing to them.  We are all different.  That doesn't make us peculiar--just different.  Though,  it is nice to have come to a personal conclusion it was SjS which brought mine on.

c3

[jazzlover]

ignatz.. Yes, you could have Lyme disease and not remember the onset. I got it when I was a child and who knows which "flu" got me or when exactly that was?

I would see if you can find a DR to sign off on the www.igenex.com  Test .. #188 and 189 are the ones  you need.

You can order a kit for free... then get a doctor to sign the form. When you send it in, you send the money for the test.

you can go to www.flash.lymenet.org for help with interpretation of the test since your doctor probably won't know the first thing about it.

Your immune system can sometimes hold the Lyme in check and then a trauma or illness allows it to come to the forefront. I was diagnosed probably 40 yrs after contracting it. Had many health problems over the years that were never identified.

[ignatz]

Re Lyme's: The test I was given in 2013 is Lyme Disease Antibody Screen. I'll talk to my Dr about the tests Igenex does. My symptoms have been given 3 different Dx's already, it would be nice to have a definitive answer for at least one potential cause. 

The link is www.lymenet.org now I think, at least that's how I found it. They have a very active support forum there, I'll check it out thanks. 

cccourt: I was very encouraged to read that you had some success treating this. I feel like I'm living in a cave most of the time also. I just work then retreat to the safety my house where I can control the environment pretty much every night. Its one thing to do that in winter but it's summer now and if I keep saying no pretty soon my friends will stop asking.

Hyperacusis seems likely, I've always been sensitive to sound and light to some degree. To take one example: Remember CRT monitors? I would get a terrible headache and nausea in just a few minutes if the monitor was set at 60mhz (it creates a subtle flicker). It boggled my mind that others could stare at the same screen all day with no ill effects.

I'm currently taking 400mg (200mg x 2) plaquinel daily. I'm very interested in LDP, I doubt my Rheumy will go for it though. The only other med he suggested is mycophenolate. And yes it is strange that he dismissed any relation between my auto-immune issues and noise sensitivity. In fact his response was that, if anything, it might lead to difficulty with hearing. Can you direct me to more info about LDP?

Ugh, I'm on my 3rd Rheumy already and I don't want to start over again. I'll see what he says when I go in next month.

Thanks again for all the suggestions and ideas.

-Ig

[ignatz]

An update in case someone comes across this later:

Re-tested for Lymes: Negative.

The ENT tested my ears. One ear is slightly better than the other and I have tinnitus but my hearing was good overall and she had no suggestions for the hyperacusis. 

The Bose QC2 earplugs were some help, especially on long drives, but not a solution.

The Rheumatologist wouldn't consider low dose prednisone and in general has shown no interest in treating the hearing, fatigue and cognitive issues that cause me the most distress.

However my other doctor (why another dr? its a long story) was fine with LDP and so I started on 5mg/day last week. There was an immediate improvement to both my hearing and energy level. It wasn't a huge 'night and day' shift but it was significant. I feel like I can go out now, I'm listening to music more, life is definitely better. Now I need to educate myself more about LDP.

thanks again,
Ig